Screw that

Upon further reflection, I’m going to tell the PTs, OTs and the social worker at Lily’s preschool to stuff it.

My kid is NOT going to arrive at school every day (when she starts kindergarten next year) in her adaptive stroller. Don’t get me wrong, I’m not in denial that she should have one. But she does not need one for school.

#1 concern: They see her arrive in that and they’ll keep her in it. I’ve heard from numerous parents that this is a REAL issue. And even the Rett specialist agreed when I pressed her on the subject.

#2 concern: How will it make HER feel? I don’t want her to get used to being ushered around. I want her to feel as independent as possible. She’s a strong-willed kid. I want to continue fostering that.

So she might be slower than the average kid, and klutzier (which may or may not have to do with Rett Syndrome – if you know me, you know what a klutz I am), but she walks. And she walks well. And she will continue to do so.

Now I have to figure out how to get her to and from school every day. But I have a year to figure that out. Wish me luck.

Post navigation

8 thoughts on “Screw that”

Chrissy, I’m so impressed by your insistence on taking charge of your daughter’s care instead of letting others do so. I don’t know what an adaptive stroller is and I don’t know if she “needs” one. But your points make so much sense. Lily keep walking! Mama, keep fighting!

No way she shoukd have to have one. If she gets a one on one they can walk with her. Katie didn’t use a stroller routinely until last year and she’s 22! That’s when wahlking long distances caused behavioral issues. But she still does short dustsnces just fine. Stick to your guns.

I found your website through Brooklyn special kids – something about your posts always touches me and now from reading your blog I know what it is! Fierce mama bear love. It brings tears to my eyes and gives me hope. So you just keep on keepin’ on. Lily is so lucky to have you. Please tell her her flower color choices are lovely!

About me

A busy mom living in Manhattan, working full time in a job that I love and raising my sweet little L - the sweetest, prettiest, funniest, hardest working, smartest, bravest 7 year old out there, who happens to have a genetic disorder called Rett Syndrome.
This site is for family and friends to follow us on our journey of health, happiness and the occasional hospital visit.
For more photos and updates, follow us at @c_m_salerno on Twitter and salernochristine on Instagram.